At the Perth ADI2015 conference recently, one of my abstracts was accepted as a poster presentation, attached here as a PDF Not Just A Challenging Behaviour_ADI2015_jpg for those of you who have asked for a copy of it or who are interested in downloading it. The image here is a screen shot of the top of the poster, which I thought was quite powerful, but my poster, and oral presentation also caused some angst amongst a minority of researchers.
During the conference dinner, one young researcher claimed three presentations, including my keynote, had insulted and offended, and that those of us who believe the terms ‘challenging behaviours’ and ‘BPSD’ are are in fact, a large part of the reason for poor dementia and aged care being the norm, rather than the exception. It was startling that a researcher, who is meant to have an open mind, could be so forceful in telling me she/her research team are right, and we are wrong. Whatever happened to researchers and academics having an open mind, or is it all about them, getting funding for new research proposals, that serve to support their previous work?
To say I was stunned is perhaps more accurate. as I have always thought academics and researchers would, and should, be more open-minded.
Perhaps more like Steven Hawking, who set about to prove his original theory was wrong, once he felt there was a problem with it. The is a true researcher, in my eyes anyway.
Suggesting research is wrong, is not meant as offensive to the researchers. Suggesting care of people with dementia, currently not being done well as the norm, is not meant to personally offend individuals. It is, what I believe as an advocate, simply what needs to be said. There are too many stories of abuse in dementia care, of restraint with drugs and keys and ‘seat belts’. Poor food, boring meaningless activities, and too much of a focus on tasks, rather then person or relationship centred care. That is also what I see, most times I enter an aged care facility.
However, there are some great people out there, working very hard to improve things.
But back to the researchers, of which I am about to become one, so I am mildly nervous about what this might do to me!!
The tendency for academics to focus on research that they believe in, often their own, and research that they believe is right, does not mean it is good or bad research, but also does not make them right. As a researcher, I want to engage in dialogue with people who also have a different opinion to mine, so that we are more open in our learning, more transparent about what we are doing.
Going into a research project, determined to fulfil one’s own hypothesis, is not helpful, or healthy.
Being more rigorous, more willing to listen to the Devil’s Advocates, more willing to consider even for a moment, your own opinion is wrong, and someone else might just be on the right track, is healthy. Regardless of prior research that might indicate the researcher is right.
It was once thought the earth was flat…
Clinicians insisting that dispensing anti psychotics as first line management for people with dementia, regardless of the fact the sector knows it is no longer considered best practice, is to me, tantamount to assault. This is made worse, when the sector openly states they know of the HALT study, and that doing it is no longer best practice, but say, it is easier than the alternative, which by the way, is as simple as what their documentation claims they are doing; they claim they are providing authentic PERSON CENTRED CARE.
But, I and many others believe this propensity to continue to prescribe and dispense anti psychotics, is supported by the term challenging behaviour and BPSD. Whilst we keep being labelled in such negative ways, it is hard for staff to see us as anything else, even if the new BPSD guidelines give better ways to manage the ‘challenging behaviours’. The labels still keeps it fairly and squarely us in the ‘it is our fault’ box, and giving us drugs to stop behaving is still easiest.
So, my final comment to researchers, academics and even the clinicians, who 100% believe me and others who are suggesting the terms BPSD and Challenging Behaviours are a big part of the problem, and the cause of poor care, is please don’t take it personally. I’m not sure if I am right, but I intend to explore it more fully, but I am also pretty sure you are not right either. Let’s work together on this, with open minds.
People like Dr Al Power and I do not mean to offend you, we are simply exploring other ways to see it, which may, we believe, improve care; Al has already had significant success in practice, so he is worth listening to, rather than simply discounting as offensive and wrong!
Some researchers have even told me they feel quite despondent that after 30 years of hard work, with absolutely the best intentions, the health care sector is still getting it so wrong. Perhaps then, they too are, part of the problem.